“We move together, with no body left behind” —Patty Berne and Sins Invalid
There’s a conversation that floats in a disabled time and place in my head. It might have been 2009 or 2011. In any case, I was a baby crip, a new crip, by which I mean I had been disabled forever but I was in my first year or two of having meaningful, on-purpose disabled BIPOC and ally community—including with crips who were elder to me. In my memory, I’m sitting around a table, probably at a Sins Invalid rehearsal or meeting, and Aurora Levins Morales was there, and I was probably talking about yet another over-the-top stressful spate of college travel gigs I had coming up. And Aurora said, very matter of factly, something like “Oh yeah, I can’t do travel gigs like that anymore—I made my living that way for years, but I had to stop because of my disabilities.”
I didn’t say anything, but I plunged into a silent panic. Inside I was like, that will never be me. I was going to keep hitting the road, being a chronically ill road warrior, Making It Work, forever. Doing college gigs for money and travelling to do readings and workshops was the first financial stability of any kind I’d ever had, and the way I had white knuckled my way into some kind of successful disabled brown no-trust-fund writing career. I couldn’t imagine stopping. To me, that meant poverty, and the death of my life as a writer.
Fast forward a decade: It’s 2019 and I started the year by subluxing my right knee rolling out of bed in the morning. I did the same thing to my left knee six weeks later, after a casual Detroit to Ann Arbor to Chicago to Minneapolis in the dead of February winter work trip. In April I popped my achilles tendon after a cross country flight, walking in flat shoes down a flat sidewalk. In June, I blew out my knee after another transcontinental flight. The first three healed ok in a few weeks. The last one didn’t. I’m still healing it, five months later, and for two to three months of it I was living with level 9 pain that cut into how much I could work or think, where taking more than a hundred steps at a time was impossible. The common denominator in most of these cases was a long flight, long days, high stress, pressure changes.
I faced it: Ten years later, I was a middle aged disabled writer, having changes that can happen to a body after 20+ years of living in a disabled body. I’d arrived where Aurora had told me I would, at a place where many people had arrived before me or been all their lives, of not being able to travel because it’s not accessible to our bodies. A place where I need to stop being the road warrior I was, being a supercrip even though it was the last thing I wanted to be, white knuckling my way past pain, exhaustion, sensory overload and the ableist violence of planes, and figure out how to actually still make a living as a writer without forcing myself into an ableist mode of work that will destroy me.
I was, being a supercrip even though it was the last thing I wanted to be, white knuckling my way past pain, exhaustion, sensory overload and the ableist violence of planes, and figure out how to actually still make a living as a writer without forcing myself into an ableist mode of work that will destroy me.
I know crip writers who don’t travel at all. I know crip writers who don’t fly, taking Amtrak for three days to get to Washington from Maine for an event. I know crip writers who appear “via robot,” Zooming in to present and perform. I know people who rely on podcasts and Instagram and webinars to get their work out, and only maybe read at events in their hometown. I know people who do only five carefully chosen and spoons-saved-for events a year, maybe only the ones they and their attendants can drive to. I know people who are way too anxious to do any kind of typical abled/neurotypical style of book reading. And all of these are people who are disabled writers and creators, making a writing life in a disabled way.
Yet none of these models are easily accessible as models if you’re not lucky enough to have disabled writer community who can share them with you. And none of these models are easily offered or accepted by the vast majority of the abled literary establishment, which assumes—as ableism does—that there is one, high speed, five things in one day, speaking verbally while standing up way of doing book readings and events, where no one ever gets sick or tired or can’t remember their own work or has a panic attack. Even reading from your book while sitting down raises eyebrows in a typical literary community—you’re ‘supposed’ to be standing to ‘look commanding’ on stage.
And then there’s the reality that we’re all hustling to get our work out, be known, sell books and have a career—and so often, we’re scrabbling so hard to get any platform at all as people who are multiple oppressed writers, that trying to also fight to change things up to be more accessible, for readings and promotion to happen differently, feels impossible.
When Care Work, my book of essays about disability justice and collective care, came out in the fall of 2018, I had a feeling of dread. The last time I’d been on book tour, in 2015 with my books Bodymap and Dirty River, I’d pushed myself a million miles past my limits. With Bodymap, I hit the road for six weeks straight. It was my first book in four years, I was totally broke, I needed money, and I reasoned, going constantly back and forth to my house was hard—why not just live out of a suitcase for a month and a half?
I don’t regret how wild it was, going from INCITE‘s Color of Violence 4 conference to reading at Heels on Wheels’ femme salon in Brooklyn, from being at an all BIPOC 30-poet superreading at AWP in Minneapolis to a raucous all-crip reading in a weird repurposed ceramics studio that was the only accessible performance venue UW Seattle could find. But at the end of it, I was so exhausted that I could barely remember my own name.
I didn’t do any of this because I thought it was an ideal choice. I did it because constantly touring and performing on an ableist exhaustion schedule is the model writers, especially grassroots queer/feminist/BIPOC writers on small presses, have been taught is how you sell books, get your name out and have any kind of success as a cultural worker.
I did it because constantly touring and performing on an ableist exhaustion schedule is the model writers, especially grassroots queer/feminist/BIPOC writers on small presses, have been taught is how you sell books, get your name out and have any kind of success as a cultural worker.
If this sounds weird, let me explain. When my career as a writer was first starting to take off and I was trying to figure out how to do it and be sick at the same time, a writer who had more class privilege than me explained that if you called what you did “performance,” colleges would pay two or three thousand dollars for it (which was a fortune, at least two months living expenses in 2005) and you could live off of that while you wrote. Another disabled friend told me a piece of secret crip advice: people like us who had peaks and valleys of energy, we couldn’t work steady jobs where you had to show up, on time, the same time every day, and ‘sickness’ was limited to an occasional cold. We’d just get fired. But working gigs, going really hard to make a chunk of money, and then crashing/resting and living off of that for a month or two? That we could do.
So, for the past decade and a half, that’s what I did. I quit doing nonprofit rape and tenant crisis line work as my bread and butter in 2005, and I got grants, I got college gigs, I wrote freelance articles, I kept my cost of living as low as possible. I taught—youth writing programs in schools and shelters, guest teaching and workshop teaching. I started and ran or co-ran a couple of organizations and sometimes got paid for that work. I performed for money, and when money was tight, I read tarot cards or taught the pelvic exam to med students or did a yard sale or pulled fill-in shifts at the rape crisis hotline or hustled an extra workshop. I never got rich, and I was usually broke, but I had time to write. And I had time to be sick, to be Mad, to be able to be in a room with the lights on low. To be disabled. That was richness unto itself.
But the pace of this work was a constant, back breaking hustle. And my being able to pull this off depended on a few things. It was helped by my being ambulatory (my wheelchair-using friends risk their chairs being broken every time they fly), being willing to fly from Seattle to Flagstaff to Philly to Iowa without batting an eyelash and living on coffee while I did it, being willing to pull energy from the core of my marrow to give a Take Back the Night speech when I was totally exhausted. Most of all, it depended on an underdocumented disabled skill: not knowing and advocating for our access needs, but the opposite: using our skills at disassociation and pain/spoons management to minimize or push past our limits, and then crashing and taking care of our needs in our safer crip homes, after the show, when no one can see. This is less vulnerable than disclosing and trying to fight for what we need and risking being turned down. And when we do it this way, we don’t look like “bad risks”, disabled people who need too much to abled people who might hire us.
The winter of 2016, after Dirty River came out, I had viral pneumonia for three months, picked up from working a day job running a disabled student center, and saying yes to every single one of the gigs I was offered. There’s a lot of March and April 2016 I don’t remember (though I do remember asking if I could take ‘just a short plane ride.’) But I do remember my partner telling me that they would never tell me what to do, but it was really hard watching me get destroyed by the road.
When Care Work was getting ready to come out, I was 43 and in a different place than I’d ever been before. I had a loving, stable partner, a sensory friendly house, a new sense of my own needs around neurodiversity. I had a lot more access and a lot more calm. So I decided to do it differently. I learned from other crip writers, who shared their tricks, like Eli Clare’s “My rule is one week at home for every one week on the road,” or were just open about their pain and how many ice packs they were going to lie on when they got home—going against the model of hiding our cripness in order to be the disabled artists abled organizers are willing to take a chance on. I went slower, with more time off to rest between events, more time off when I came home, and more asks of access needs being there.
I did this in community with other disabled writers and artists who are also “cripping” ableist expectations of how we do art—from the way Sins Invalid unapologetically rescheduled major performances to months or years later when directors or performers are seriously ill (flying in the face of ‘the show must go on’ performance ethics that force disabled people who get sick to not be involved), to the disabled performance festival I was blessed to be a part of in April 2019, I wanna be with you everywhere, which altered traditional performance set-ups to have two or three performers a night (not 8) with 30-45 minute breaks in between, so that disabled performers and attendees could take in the art at a more accessible pace, take care of access needs and also connect and hang out with each other, making use of a rare time of disabled coming together.
Sometimes, as I’ve talked about my experiments with changing the ways we make and tour art, I’ve gotten pushback from some other disabled or chronically ill folks, of the ‘it sucks but this is just the way it is’ variety—that there’s no other way than to take a redeye or do twelve things in one day. It’s true that it often is what’s expected of us—but there’s also a whiff of self congratulatory martyrdom. It sucks, but don’t we supercrips rock, grinning our way through total exhaustion?
But if there’s one thing disabled people are good at, it’s saying there is no one way it has to be.
But if there’s one thing disabled people are good at, it’s saying there is no one way it has to be. We are so good at imagining completely other ways of living, working, not working, having relationships. We can crip a book tour.
There is no one way to be disabled, but more access leads to more access for everyone[1]. The notes I have below speak to my experience as a cane using, mostly ambulatory, autistic and CPTSD’d out person with a porous immune system, bendy joints and chronic fatigue and pain, who can do a bunch of things, but carefully—and if they crip it. Take what works for you, leave the rest, and make your own.
In the spirit of crip knowledge sharing, here’s some of what I tried out:
Even if you did that big show or book, you’re really still disabled. People might send you a million emails and want a million things done in five minutes. If you can’t email them back or do them all—or most of them—it’s ok. If people get frustrated, they don’t understand that you are still really disabled, and if they want the disabled writing/art, they also need to be prepared to deal with the disabled body/mind that made it. This attitude change really helped lower my anxiety and panic, rooted in imposter syndrome, when I was freaking out, worried that people hated me for not answering every email within 30 seconds. I also put an autoreply on my email that said, “I’m disabled and get a lot of email, and move on krip time.” Believe me, I know the pressure to keep the hustle going, and the fear that if you don’t reply fast you’ll be seen as disrespectful or flaky, or lose am opportunity. But I also believe in the quiet power of pushing back on expectations of constant instantaneous internet communication, slowing things down to move as our bodies can and do.
The train, not the plane. Or short planes only. Or basically, whatever works… I’ve been experimenting with doing a lot more train trips instead of flights. Those disabled seats are big and comfy, there’s no TSA-created panic attack and my body doesn’t get fucked up from being shot into the sky and brought back down. So far the longest I’ve done is 12 hours, and it was surprisingly comfortable for me.
The train is not accessible for everyone; Amtrak seating only allows space for one wheelchair user at a time, for example, and witness the recent scandal where they attempted to charge Chicago disability activist group Access Living $25,000 for two wheelchair users to travel. Time is a factor: because the train is slower, so it means at the very least changing your planning about how long you will be away or en route. A parenting friend shared that because she can’t be away from her kid for that long, it wouldn’t be accessible for her.
Going someplace for a week, not a day. Disabled Puerto Rican Jewish elder writer Aurora Levins Morales taught me this one—instead of the pressure to fit as many events and places into a week as possible, she goes to one city and stays for a week to a month, spreading out events, allowing her time to rest or reschedule if bodymind things come up, and letting her build real connections with folks.
Zoom as an equivalent to, not a cut rate replacement for, performing live. Disabled Latinx/Native/white writer Naomi Ortiz calls this “appearing by robot.” A few years ago, when I had pneumonia, I started apologetically asking if Zooming in might be an option. Since then, I’ve Zoomed into a lot of college classrooms and some conferences and festivals. At first, I often did this as a cut rate option. Aurora Levins Morales shared with me that she’s started Zooming in to read, lecture or perform, and offers it not as a cheaper option, but as an equivalent to in-person readings that saves carbon and allows her to be present as an elder disabled writer of color. Organizers may hem and haw and say things like “the technology’s so tricky” (it’s mostly not) or “it’s not just the same thing” (no, it’s a disabled thing that lets disabled people to be present), but with commitment and culture shifts (so when tech freezes, there’s someone there to work it out and it’s not a huge deal), virtual presence can be powerful. It also makes room for recording, and for people who also can’t be there to attend via Livestream.
Permission to do less. When I was on the Boston-Philly leg of the Care Work tour, I booked in a lot of time to not do shit. I locked myself in the one hotel room I got and watched a lot of tv. I let my brain rest. I let myself not have Intense Conversations, All the Time. I wore my ear protectors and let myself have unscheduled time to just go to the drugstore, have routines (crucial to what helps me thrive as an autistic person), and go to sleep, even if I’m visiting a Big Exciting City and Think I Should be Out. I try to remind myself that touring is exhausting even when it’s accessible.
I still have that voice in my head that says “You’re reading poetry/writing to people, how hard could it be?” But being on stage performing, talking about intense shit and holding space for people as they cry or ask you about intense personal disabled/survivor/etc stuff, is intense and takes a lot of energy. I did one-off events, or shorter tours (four cities, an hour or so away from each other, in a week or ten days.) I prioritized the kinds of gigs and media I really cared about and coulddo, and practiced saying, “Gosh, I wish I could, but I’ve hit my limit,” to the rest.
Your spoonie-ass fan base are your friends. You have low spoons and can’t make it out to most of the events you want to go to, right? Great, neither can a lot of your fans! Plenty of people bought Care Work who never made it to a reading, but read it in bed and shared it with their friends. People posting about the book on Instagram, using hashtags like #disabilityjustice and #carework, helped spread the word and sold a ton of copies. I got a small number of great reviews, but plenty of mainstream media sites still have no idea how to review a book that’s not inspiration porn so much as being a sarcastic disability justice mixtape. And the book still sold out its first printing in six weeks and has been my publisher’s #1 bestseller in the US since it got printed. Instagram and social media can be disabled promo access tools.
Your access rider is your friend and a disability justice organizing opportunity. When booking my gigs, I pre-made a list of both my access needs and accessibility I wanted at the event, and sent it to the venue and organizers. Mine includes a chair, water, low or natural lighting, downtime before the event, no stairs, someone to meet me and take me to the space so I won’t get lost, and a fragrance free request. I also ask for broader access—ASL interpretation and meaningful promo to Deaf community, childcare, sliding scale, food, fat accessible seating. When I’m at readings or other cultural spaces that are held collectively by disabled kin, there is, in the words of I wanna be with you everywhere, “a major sense of ease.” Having a temporary accessible space of disabled love changes how I perform and makes it better.
Get help. After years of either straight up not being able to afford it or grinding my teeth about whether I could, I hired a friend to do some part time admin work. Working with him an hour a week was a huge boon to my executive function—helping me figure out that no, I could not get from Portland to Atlanta in three hours and doing emails in minutes that would’ve taken me hours. A couple hundred bucks here and there over six months was crucial access support. I know not everyone can afford that, but if you can figure out a side hustle or a spot in your budget for it, it might save your ass. Maybe you can do barter or work trade, too.
Writing in a “so when/if I get sick, can there be a rescheduling?” clause so you don’t automatically just lose all the money if you have to cancel. So you book in a college visit—and then you get sick the day before. Usually, you just lose all the money. What if you write in a clause that says something like, “In the spirit of disability justice, we will reschedule or arrange for virtual visitation if the Artist/Presenter has a flare up or illness on the original day?” This is new for me, but I am excited to try it!
Today, almost twenty years after I started touring, my life is different and so is the world. There are so many more disabled, sick, neurodivergent, Mad and Deaf writers, artists and performers out there. I am not the only one I know anymore. We are increasingly organizing, not apologizing for ourselves. The suggestions in this piece are just a few beginning ideas towards cripping the book tour—changing the ways touring, writing and making a creative life can be. We are sitting down, asking for water, going slower, recording podcasts over long tours, taking breaks, reading at the community center, turning the lights low, reading while lying down, speaking directly to disabled people as our focus audience and bucking the assumption of that abled people are the only people who like books, and refusing to obey the pressure to pretend that we aren’t the bodies that created the work. We are creating possibility models that both allow us to be brilliant disabled writers without jettisoning or wrecking our body/minds, and, if we keep going with it, have the potential of transforming all the ways the literary establishment says a successful writer has to be.
[1] This is a common phrase in disability community. When people resist access and are like “argh, but we can’t do everything, what if we don’t do every single access thing!” we say, more access means more access. Like, a ramp is one form of access mostly thought of for wheelchair users, but it also is usable for everyone and is an access hack for many other kinds of bodies who might need it- people pushing strollers, people with knee pain, people hauling equipment. And asking for and getting a baseline of access allows us to build a foundation that allows us to build more access.
